22 years old With Osteomyelitis in my jaw- 8 years of pain -

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It is quite difficult to start writing about something which has been such a big part of my life for 8 years. I will start from the beginning...

It started when I was 14 out of nowhere. The dentist I saw said I had a displaced jaw bone and this was the reason for my pain. I will always remember him asking if I had a boyfriend 'as kissing would make it worse?!' I did not. So at this stage I thought that this was the reason for my pain - a displaced jaw bone. I was given 600mg of Iboprufen and took this every day alongside paracetomal (8 tablets a day).

Over the next year the pain got particularly worse and my face swelled like a balloon. At the age of 15 I did not sleep at all. I had constant pain and was taking as much painkillers as I possibly could. The swelling got that bad on the right side of my face I felt like a monster. I grew my hair to as long as I could and would constantly cover my face with my long hair and a scarf.

Over the summer it would be increasingly difficult to cover my face without a scarf and when I was 15 I could no longer take this pain from my 'displaced jaw'. My mum and dad took me to A&E. Instantly the doctors here realised something was not right and I was admitted. Many tests were done to see what the problem was. I was discharged from hospital with painkillers and had to wait for my results.

I went to see one doctor for my results who I had seen whilst in A&E she specialised in cancer but luckily I was told by her I did not have this.

I had tests such as blood tests, bone scans, MRI scans, CT scans and a biopsy which told me that I had Osteomyelitis in my right lower jaw bone. I was referred to a very good consultant in the 'maxfax' department. He said that the steps that would be taken would be firstly an operation which would be done internally to shave away the acess bone and would hopefully relieve me of some pain. Whilst waiting for the operation I was given the antibiotic Amoxycillin.

I had the operation when I had just turned 16 I think. By this point I had not had a full night sleep for a year and a half. This was very frustrating as I was trying to live a normal life as possible. I was trying to be a good student at high school and not get behind with work. I was in excrutiatiing pain- I constantly felt like I was being viciously stabbed in the right side of my jaw. This pain often went up into my ear and below my eye. Often I was in too much pain to attend school, luckily I had one amazing teacher there that always sent work home and constantly reassured me that everything would be fine. I was particularly worried as this was happening whilst I was preparing for my GCSE's.

After the operation my face was badly bruised and I had very bad swelling. This was expected though as the operation wasn't plain and simple. One part of my face looked as though I had a tennis ball in it. I also had drains coming from underneath my chin that was draining access blood. I recovered in hospital for around 10 days and was given oral antibiotics to take home.

I saw my consultant regularly. Once the swelling had gone down from the operation- the swelling that was normally there from my osteomylitus wasn't as bad at the side of my jaw as this had been shaved away. Swelling of the bone was still there though. My consultant suggested I have hyperbaric treatment every day for 6 weeks. I was just waiting for a space to become available.

A space came available for the hyperbaric treatment - I remember being at school , I was taken out of my class to be told this treatment was going to start. I cried. A mixture of relief that the pain and this horrible swelling might eventually go. Again I missed a lot of school as I went every day to hull for this treatment. I have sworn to myself I would never have this treatment again. Hyperbaric treatment helps to get oxygen to the jaw so there is a better blood supply to the bone. A lot of cancer patients attended this treatment also. I had to enter a tank every day- put a oxygen mask over my head - something I can only describe as something astronauts would wear! For around two hours I was In this tank with a nurse and around 6 other patients- the pressure in the tank is changed and you have to make your ears pop like you would do on an aeroplane before the pressure goes below a certain number- a weird treatment but I can see the logic in it. I don't think the treatment really worked for me to be honest and I wouldn't do it again- but it may work well for others.

For the next couple of years I went on to do my a levels. I was on long term anti biotics as the osteomylitus had not gone away. I found Amoxycillin did not work for me so I was put on long term penicillin whilst on painkillers. I found that stress aggravated my jaw bone and I had episodes where my jaw would swell up more. At this point I had always said to my consultant that it may be my wisdom teeth were making my jaw worse. I was put to sleep and I had these removed from my right side- my pain did not stop so unfortunately this was not a cause of my osteomyelitis.

After my A levels I decided to take a year out and work full time at the job I was currently working part time at. At this point I was 18-19- during this time as I was older I could take stronger pain killers. I am intolerant to codeine so my options were ibuprofen and paracetomals or dicloflenac when this didn't work I would take tramadol which would have horrible side effects. When these did not control my pain my only option would be to go to A&E and be admitted to have stronger pain killers and anti biotics through an IV.

When I was 19 I was admitted to hospital because I was in so much pain. My consultant wasn't around at the hospital in this occasion so people he worked with decided they would operate as they wanted to drain my swelling at the side of my face of fluid as the swelling was getting uncreasingly worse. I have forgotten to mention that most of the time the opening of my mouth is restricted due to the swelling in and around my bone. This is another reason for operating. When they operated there was not a lot of fluid. The IV antibiotics took my pain and swelling done as well as a lot of morphine! And this episode seemed to be over with.

That's what there seems to be these episodes where my face swells and which then leads to a lot of pain. Some times I go months without these flare ups. From the age 19.5 - 21 I had minor flare ups which were bare able.

At 19 I started the studying for my 3 year course for my degree- I didn't want this horrible infection to take over my life. During this time I was given a mouth guard to wear at night to make sure that grinding my teeth is not an aggravating factor, and I also had root canal treatment to make sure I had nerves in my teeth and that a tooth was not dead and the cause of the osteomylitus. All of my teeth are fine.

It is now December 2011 I am 22. I am in the 3rd and final of my university degree. This year I have had many episodes/flare ups of my osteomyelitis - even though I always have it- my face can flare up and swell more and the pain is worse and becomes unbearable. This year I have been admitted into hospital twice.

First in April- the reason for this flare up I believe to be because of stress with work from university as I had 4 exams in a week so lots of intense studying. I had IV of antibiotics and Painkillers in hospital which seemed to work. I was in hospital for 4 days.

August of this year I was admitted for the second time. This was a very different experience for me and not a pleasant one. My consultant was not informed that I was admitted and I had doctors which new nothing about my Illness working on me. I was in for 8 days. I was not happy and did not feel any better from me entering hospital until the time I left. Normally when I am given metrodisonal and clindamycin through IV this reduces the swelling this did not happen and the swelling started to go to the side of my throat.

After seeing my consultant he suggested that we operate again as the anti biotics are not working as effectively. I really want to finish my degree at uni so I am trying to simply power through the pain. My consultant is fantastic and we work together as he rightly says nobody knows my condition as much as me. So I am delaying another operation at the minute. The operation Wil not guarantee that the osteomyelitis will go completely and this time he would have to operate externally which will leave me with a big scar. This is the reason for him not wanting to operate before with me being young he does not want to leave me with a big scar.

At the minute I am in the middle of another flare up it is close to Christmas and I do not want to be in hospital again So I am trying to control the pain at home.

A few things I have forgot to mention: at one point my consultant explained to my mum the pain I was going through like having 10 abcesses under each tooth on the side of my face ( hopefully this will put the pain I go through in context)

Also factors I have found which make my osteomylitus flare ups worse:

Cold weather (the reason for my recent flare up)

The change in weather

Lack of sleep

Cold drinks

Alcohol assumption when I am having a flare up.

Finally, sorry if my story is a bit all over the place it is hard to remember everything that has happened in 8 years. Please anyone get in touch who have this condition maybe we can help each other?!

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  • Posted

    Hi there im 25 and have recently been told i have Osteomyelitis in my left forearm. Never had it before although i did cut my finger quite deeply at work (i clean after students so kitchens can be very dirty places, lots of bacterie i guess) i spent 4 days in hosp on IV anti biotics and 6 weeks later im sat at work still taking oral. I have 0 pain 0 swelling and full mobility of my arm again. But i am still being referred to a specialist and im hoing crazy with worry sad

    Youre not alone ive been awake through heart surgery, and no pain compares to osteomyelitis! Hope you feel better soon. Read my post ive put up. I feel really alone talking helps so much.

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  • Posted

    Hi, I've had Cronic Difuse Sclarosing Osteomyelitis for more than half my life. I was first diagnosed with something else before the doctor did a biopsy and took it with him to a medical conference in Singaore. At the time I was told I was the fifth known person in Australia to have it in my jaw. I like you also had the debulk done and had the drainage tube. I had to do exercises with my "Therobite" to open my jaw after the surgery. It used to be so bad that my Mum would crush Panadol tablets up and mix it with honey and feed it to me on a knife blade because I couldn't fit a tablet in my mouth. I'm almost 22 myself and am still getting flare ups... Mostly at night but sometimes at work if I'm on the phone a lot. I've just found out that my specialist is overseas and my not be returning to Australia so I now have to find another one which won't be easy! I agree with you about the weather, my jaw always plays up more in winter although cold water and alcohol don't seem to effect it. Have you found that the debulking has reduced the pain or even at least minimised the amount of times you get pain? I was told a jaw reconstruction was an option for me after I stopped growing. Would be good to hear back from you, it's hard to explain the pain to people who don't have it.
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  • Posted

    Hi osteomyelitisarmboy thank you for getting in touch. You are the first person I have spoken to who has osteomylitus! That is good news that you are not having any more pain in swelling. Hopefully your condition will be acute and not chronic osteomylitus. They are probably keeping you on the tablets to ensure that the infection has completley gone- I wouldn't worry until you know more. It is good they are keeping you on them!

    It is so scary that you have been through open heart surgery and osteomylitus is worse- this really puts the pain into perspective I have told my family about your comments on this as it is really hard for others to understand what pain you are going through when it is an undescrible pain!!

    I have read your post and understand that you are worried about a scan/x ray that you have recently had. All of my scans show an area which is large/white and almost clouded. This is due to me having chronic osteomylitus though as I have had it for so long- when are you next seeing your consultant you could ask if it is likely if your osteomylitus is chronic and if they feel it would come back. I have periods of time (months) in which my osteomylitus is fine and then it can flare up out of no where (again due to this being chronic).

    I have done a lot of research on osteomylitus and the research that I have done shows that it is much more treatable in the arm or a limb so fingers crossed it can be treated for you and for it not to return!

    My osteomylitus is returning more so because it is under my chin/jaw bone and this is the area my consultant could not remove in surgery due to operating internally.

    How are you feeling now? Any more swelling/pain?

    Hope you are well smile

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  • Posted

    Hi Kirsty thank you so much for replying and getting in touch it made my day when I recieved an email saying you had posted as I can really relate to you.

    I do not know of anyone in England who has osteomylitus in the jaw and neither does my consultant- he always takes my case to regional meetings and nobody there knows anything either- it really is very rare!

    Did the debulk surgery help you? I feel it has helped me a lot the swelling is nowhere near as severe as it used to be and I don't think that I have as many flare ups as I used to so it has helped me a great deal- just not enough!

    I had exactly the same issues with my jaw I could not open it and also had to do excercises but they did not work until the infection and swelling had gone down.

    I have had many experiences the same as you - I used to have to have soluble painkillers as I could not open my mouth- I used to have my bite measured regularly as I often could not open my mouth more than a centimetre.

    I find I get flare ups when I don't sleep and at night my flare ups are often worse like yourself. I often get them at work if I feel stressed. Are there any other factors that you have found start a flare up? Its nice to know I am not going insane and cold weather sets your flare ups off too!

    If you don't mind me asking is your current consultant part of the maxi facial department? Mine is and also specialises in oral surgery- hope this helps in some way. Also I wonder if you could get in touch with your consultant some way and ask if he can refer you to someone he knows who is aware of osteomylitus or if he can recommend anyone?

    An update for you on my case- I went to see my consultant just under a week ago- I have only had one major flare up this year and have only been admitted to hospital once (which is good for me as I was admitted four times last year). My consultant said to me last week that once I have stopped my orthodontic treatment (I have a brace - nothing to do with my jaw) he wants me to see him as he is thinking of debulking my jaw bone again as he has newer and smaller tools now which he thinks may be able to get the bone under my jaw bone. I discussed a jaw reconstruction with him as I have read up on this before. He said that it is a major operation which would leave me with a big scare as he would have to peel back a lot of the skin. He also said that he has done similar operations on other patients and it has led to further chronic problems in the future so he wasnt sure about this.

    I have found that the anti biotics Metrodizonal and Clindamycin work well for me and when I take them together when I was in hospital this year I was given them through IV and this helped reduce the swelling. This time I was on oral morphine which did not touch the pain but the anti biotics helped overall.

    Did your debulk operation consist of operating inside or outiside of the face? Mine was internally and I still have a lot of added bone underneath my jaw bone which he could not get to. I am really concious of it and dont like my picture taken as I feel you can see it more on photographs and on a reflection. It is the right side of my jaw, where is yours? Can you see the swelling like mine? Does your face get a lot more swollen with a flare up mine does? Also how long do your flare ups normally last and do u take any anti biotics when a flare up happens?

    Sorry for all of the questions I am just overwhelmed that someone feels the same as me! Hope you are well and you are right it is hard for someone to understand when they have not experienced it! I often feel lonely and like one of a kind!

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  • Posted

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    Hi, I know exactly how you feel, I knew there were others out there with Osteomylitus but I’ve never spoken to anyone before. It’s comforting to read what you’ve gone through and know that I’m not alone. Apparently all of the other cases in Australia (4 other cases known of when I was diagnosed in 2001) were females, however I’ve read online that it’s more commonly found in men. I have also read that it is more common to get it in the lower jaw, which mine is (left side). Is yours lower or upper?

    I think the debulk helped me a lot although I’ve only had one debulk in 11 years. Mum told me she wrote down the month (September 2000)  which is when I first started getting pain, I would get pain every night within half an hour or so of going to bed. We thought it might have been a tooth ache so I went to a dentist who took X rays and then referred me to my specialist Dr. Anthony Oliver who is an Oral and Maxillofacial Surgeon. He did the biopsy within a couple of days of meeting me and I was diagnosed with two other things before settling on Osteomylitus. I can’t remember exactly how much time was in between the biopsy and the debulk but I think it was about a year before they did it. My jaw kept locking up and it was affecting my talking, eating, sleeping and school. After the surgery I couldn’t talk and would get people’s attention by clicking my fingers. I also had the drainage tube in the middle of my neck. They did the debulk internally so I don’t have any visible scars apart from where the tube was. When I run my tongue along the outside of my mouth I can feel the scar. Two weeks after my operation I went on school camp and had a photo taken of me, I look as if I have a ball shoved in my mouth. My face was really puffy and I remember it feeling very heavy. As I’ve gotten older I’ve found that it doesn’t flare up as much and I don’t have the same swelling or locking issues as I once did. Sometimes I can go three months without having any pain which is great – I almost forget I have it!

    We’re at the end of our Winter over here and this one has been particularly bad for me. My jaw is flaring up at the moment and has been since the start of this week. A couple of weeks ago it flared up for three weeks straight. I was going to work tired and cranky from lack of sleep. It was waking me up at least once a night but some nights it got up to three times in a night. I’m not sure how long your pain usually lasts for but mine seems to take around half an hour to an hour before my painkillers kick in. I’ve been taking 1mg of Prednisone and 10mg of Mobilis for years now (I can’t remember how long exactly). The Prednisone is a steroid and the Mobilis is an anti inflammatory. I don’t honestly believe they help me at all, with or without the drugs I still have flare ups and they don’t seem to be any more frequent when I don’t take the tablets. I’m getting to the stage where I am seriously doubting that it will just disappear one day. My Doctor hoped that it would phase out by the time I had stopped growing which obviously hasn’t happened. I have a Doctor’s appointment on Monday with my normal GP to see if she can refer me to another Oral and Maxillofacial Surgeon. I’ve contacted the office of my first one and he has been in Denmark since the start of the year and they don’t know if he is coming back. I’m on a list of people to call if he returns to Australia but I just can’t wait in case he doesn’t come back. I was seeing him quite a bit at the start of all of this and then over the years it just became a “see me on a as need basis”. The last time I saw him was about 2 years ago. I’ve got my CAT scan X rays to take with me on Monday and I am going to request another CAT scan so we can compare the sizing from the scan taken in 2006 to now.  I have started thinking about getting another debulk in the hope that it might put off the pain even more.

    That’s interesting what you said about the jaw reconstruction, my Doctor said that might be an option for me later in life but didn’t consider it while I was still growing. I knew it would be a major operation with a lot of down time for recovery but never thought about it causing more issues down the track. I’ll write down the antibiotics that your taking and ask my GP about it, maybe she can put me on them or something similar?

    To answer your question about being self conscious – yes when I was younger and when it was a lot more noticeable I would cover it with my hair and would hate tying my hair up. These days I’m not too worried about it, I guess that’s because I am use to it now. People don’t really notice the difference unless I tell them about it and then they look at me front on and then they can see it. I think it does get more noticeably swollen when I am having flare ups but I think I’m the only one that can tell. It was a lot worse when I was younger and you really could tell my good days from the bad. Does yours get noticeably swollen or is it noticeable all the time?

    I’ve never been admitted to hospital for the pain I’ve always just put up with it. I know this is bad but when it gets really sore I grind my teeth – it helps it momentarily. I also have a wheat bag which I heat up in the microwave for about 2-3 minutes which I find can help it too. Maybe you could try one of them if you don’t already have one? My Mum and I also had a theory that the flare ups could be linked with “that time of the month” but I’m beginning to think that it isn’t the case anymore. I also wanted to ask if you had any surgery or dental work done prior to you getting Osteomylitus? I keep reading that Osteomylitus in the jaw is caused by an infection during surgery or dental work on the mouth. I had teeth removed in surgery when I was about 7 and I wonder if this is how I got it. Apparently I bit the dentist on the finger too much when he tried to remove some teeth in the dental chair so decided it was safer for both of us to do it while I was asleep....maybe this is my karma for biting the dentist???

    You’re not alone anymore smile

                   

     

     

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    • Posted

      Hi Kirsty

      I can't remember if I've replied to your post yet, I've talked to quite a few osteo patients on here. I live in California in the US. My story sounds very similar to yours. I'm 33 now and I've had horrendous pain for about 15 years. I've had 5 surgeries where they scrape out dead bone along with getting the I.V. Antibiotics for 8-12 weeks at a time.

      Yes, your monthly cycle can definitely raise pain levels! I've been experiencing this for years. I finally figured out that my period was making the jaw pain worse!!

      I think my osteomyelitis started when I got my wisdom teeth removed when I was 17. Somehow the infection began then. Unfortunately it took 11 years before I was diagnosed with Osteomyelitis. So by then a lot of my lower right jaw was infected and the bone dying. I am currently sitting on the couch in our family room and it's 3:00 in the morning. I could not fall asleep because the pain has been bad this past week. And guess what, my cycle just started, so that's proof that your menstrual cycle affects pain levels! I'm so miserable. I actually just had a surgery in November and a picc line iv treatment for 8 weeks after the surgery. And I'm still having pain! I did feel great after the surgery for about 3 months but the pain came back sad and I think this time the doc cut my trigeminal nerve which is causing me lots of pain too. I'm glad to find someone else who knows exactly how I feel.

      I hope you have been feeling better!

      Best,

      Melinda

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    • Posted

      Hi Melinda, Oh my goodness, your story sounds exactly like mine, and I live in CA too! Im in southern CA and it has taken 5 years for doctors to take me seriously. Even now, I have to harrass them to pay any attention to me. It seems like they don't want to deal with me because I am such a complicated case! What doctor are you seeing and where are you located? I could use some help in finding a new specialist who will take me seriously! Can you message me ASAP?

      I had an impacted wisdom tooth extracted at 26 and now I am 31 and and I STILL have pain and swelling which I am sure is most likely Osteo. I haven't even wanted to celebrate holidays or my bday for the past 5 years because I am so miserable and in pain all of the time! It is such a nightmare! I cannot believe you have been suffering for 11 years, I really feel for you!

      Please get back to me ASAP, I would love to switch contact info with you!

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    • Posted

      Hi cafemisto,

      Melindasmakeup helped me with a referral to Dr. Freymiller at UCLA. Dealing with the UCLA School of Dentistry is a pain, but Dr. Freymiller is the best.  He ordered a Bone Scan.  Last week I went for the results, which showed no Osteomyelitis, which ended 5 years of not knowing after I was misdiagnosed by Loma LInda Maxillary Facial Dentistry department.  So, at least I can rule it out.  I hope you have insurance.  Dr. Freymiller's bill was almost $700 and the Bone Scan People billed my insurance $10,000

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    • Posted

      Hi Susie! Thanks so much for the info! Please see your private messages! I've sent you a private message- I think I can learn a lot from your case as well as Melindas!

       

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    • Posted

      I am in CA too. Took 3 years before I got diagnosed with Chronic Osteomyelitis of the jaw. I was in the hospital a week, had debridement surgery and then a picc line for 3 months. Now I am back in pain again and have severe jaw and severe shooting ear pains that come and go. Have you had ear pain? Are you still dealing with this?
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  • Posted

    Hi, I've sent you a really long reply and it said it has to be approved by the site, I hope it comes through soon smile
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  • Posted

    Hi. I waited for the what seemed like the longest week of my life for Birmingham Orthapedic hospital ring. Then finally they did and a nice lady told me its NOT a tumor ( :D ) and its definitely infection. I also dont need a bone biopsy and to see my consultant at next appntmnt (tomorrow in fact) so ill know more tomorrow im hoping for either stay on ANti bios or i can come off them. I sometimes feel very slight ache in left arm but not enough to bother me. I know im not the only one with this condition and although the pain was like the wrath of God, i sympathise with yours and Kirstys stories. I dont know about you two but it makes it alot better to talk to people who understand? Ill let u know more when i see doc in morning. I prayed it wasnt a tumour and it wasnt so now im praying my arms clearing up (not very religious until this condition but i will say one for you guys too)

    Mike

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  • Posted

    H yeh kirsty is correct the hot wheat bags where great at releiving my pain short term
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  • Posted

    Hi I just read your post,very interesting,I feel for you I really do. As I have Osteomyelitis in my lower left jaw,they think it was from when I had tooth problems,as Iv'e had the two teeth removed from the area where the Osteomyelitis is. It all started about a year to a year in a half ago Iv'e been to dental hospital had a biopsy from inside my jaw and one from the outside of my jaw,I have a little scar but it's not such a big deal it cleared up nicely,anyway that's not the issue.Iv'e been on antibiotics and pain killers ever since I was diagnosed with the infection,and it does clear up but then it comes back I also don't sleep I can't remember the last time I had a decent night sleep with out being woken up with the pain,I just wish it would go for some reason after they did the biopsy I had a swelling that wasn't there before and I still have it,and the inside of my jaw is swollen,you know when you have your jaw numbed by your dentist if you have a filling or a tooth out,and the place he puts the needle right in the back of your jaw,it's there where it hurts so much. I sometimes wounder if the antibiotics really are working for me,I'm due to go back to the dental hospital again in October this year 2012,Iv'e been to that place so many times I should take my bed there and sleep there..ha ha........and they say it can take time every time I go there that is all they really say,I so don't want an operation but if I do need one then so be it. I'm also a smoker for my sins they say smoking has a big effect on the healing process,as the smoke effects the oxygen. But as you said in your post you talked about the treatment you had Hyperbaric treatment but you said it didn't work,so I'm thinking me giving up smoking is it really going to have such a good effect,I really don't know. You are not alone believe me your not...anyway that's all I wanted to say and share with you for now...peace out.
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